Hello, I'm brand new to this group... I have a little girl who will
be 8 in 7 days - she is extremely medically fragile, which a huge
medical history, including 5 open heart surgeries, cardiac arrest,
seizures, and a flat-line EEG a few years ago! Her heart Dx is
Tetralogoy of Fallot with Pulmonary Atresia, and Major
AortoPulmonary Collateral Arteries. She also has DiGeorge Syndrome
(AKA VeloCardioFacial Syndrome, or 22Q11 Deletion Syndrome). Her
latest Dx is Cyclic Vomiting Syndrome. She has had these severe
vomiting episodes since she was 2 years old, with Drs at Children's
Hosp of Philadelphia running EVERY test imaginable. Since this is a
diagnosis of exclusion, it has taken 6 years to finally agree that
this is what this poor baby is suffering from. I'm wondering if any
of you have heard of Dr Li in Wisconsin?? He oversees 715 CVS
patients, in 42 states, and as far as Hong Kong & Australia. We are
praying right now whether or not we should travel to Wisconsin to
see Dr Li. Our docs at CHOP has contacted him for help, but they
have not done EVERYthing he suggested. They followed his
recommendations for rescus measures, but not for prevention.
Presently Emmie is taking Topomax, and we're seeing severe side
effects. Also, any children with DiGeorge Syndrome like my little
Emmie?? The docs don't seem to know if there is a connection between
DiGeorge & CVS. I do appreciats any help/advice any of you may have.
What a blessing that I found this group!! If you'd like to meet my
little angel, here is her site: www.emmie.info ... She also has a
CarePages page, which can be linked through her website. Thanks! God
bless! -Kim in NJ